Four/Five/Six Strings & The Truth

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Hereditary Angioedema

Last Saturday my wife and I attended a patients day for hereditary angioedema sufferers. It was hosted by HAEUK at a hotel in Bristol. I though I’d post a short report for other patients who I know sometimes read this blog.

The day was attended by around 100 – 120 people, many of whom were patients or family members, as well as doctors and other representatives of the medical profession.

A number of presentations were featured throughout the day. These included Dr Tariq El Shanawany speaking about new developments in HAE, Dr Mark Gompels speaking about sport and the HAE patient, Henrik Boysen speaking about HAEi (international) and Dr Scott Hackett speaking about HAE in the family.

We saw a short film that has been produced, in which several patients (myself included) were interviewed about their experiences with peripheral attacks.

Two patients told stories about their case history and how they had overcome many of the difficulties that the condition presented them with. Paul Carrol, told us about how he had started to run for fun a few years ago and is now a marathon runner and a triathlete and Dana Shapiro spoke about her recent trip to Kilimanjaro.

The afternoon saw is breaking up into small groups to meet each other and discuss our experiences, and Alex Graham (HAEUK’s youth ambassador) told us about some of the achievements of young patients.

It was a very successful and informative day, I met many old friends and some new ones. We came away, as always from an event like this, encouraged and refreshed.

If you’re just reading this and wondering what HAE is, you can read my case story here.

I’ve had my Hereditary Angioedema page on this site for a few years now, It gets quite a lot of hits from around the world and the story has been shared on lots of different websites. I get quite a few emails from fellow patients and I’m always happy to chat about the condition.

Periodically I update the story with recent developments, but doing that has made the page become something of an epic, so I thought instead that I would update everyone via the occasional blogpost, so here’s one.

This year has been as interesting as any for a HAE patient. For a long time now I have been suffering with dry scaly, skin on my back and this year I’m also getting it on one of my forearms. I discussed this with my immunologist and we thought it might be a potential side effect of long term use of tranexamic acid.

As my HAE swelling are generally not too severe, especially compared to some, he suggested that I come off the drug altogether for a while and ascertain whether the skin problem improved.

I’ve been taking tranexamic acid for over twenty years now, so had no idea what would happen, but I came off the drug altogether. After about a week or so I had a completely spontaneous swelling in my right arm, there were no trigger factors, such as a bump or fall that we could identify. The attack started with the typical red rash, you can see what that looks like in the attached picture.

The swelling started as a pronounced lump in the middle of my forearm and gradually worsened, spreading right up to the elbow and down into my right arm. Once it had started I declared the tranexamic acid experiment a failure and jumped straight back on them, taking an increased dose for a few days.

Despite that the attack lasted for a good few days. I didn’t go for hospital treatment, I never do for arms and legs as they are not dangerous attacks, just a bloody inconvenience.

After being back on the medication for a few weeks I suffered another attack, again spontaneous with no trigger factors, this time it was in an area that, well let’s just say I won’t be posting any pictures of that one! I’ve had attacks like that in the past and they are extremely painful and debilitating. Last a day or two before subsiding.

I guess the lesson for me is that if you have a medication regime that is working it probably doesn’t pay to bugger about with it.

I just had a conversation with the cashier in Tesco, which is so unbelievably hilarious that I don’t know whether to laugh or cry in despair, I had to blog about it just to get it off my chest!

First a bit of background. I have a condition called hereditary angioedema, I’ve written extensively about that elsewhere on this site, so if you want to know more try here.

One of the ways in which I manage the condition is simply by watching what I eat, I discovered a long time ago that there are certain things that are prone to causing an attack, so I avoid those foods altogether. The main thing I have to avoid is fatty meat, primarily beef, lamb and pork.

Poultry and fish are fine though and I also eat a lot of vegetarian food. Just now and then I buy turkey rashers, as a kind of poor substitute for bacon if I fancy a cooked breakfast.

So here I was in Tesco today, getting the shopping in and I fancy some turkey rashers. I head for the till and as she is ringing everything up the cashier comes across this apparently unusual item and we have a conversation that goes something like this:

Cashier: So are these like bacon, only made out of turkey then?

Me: yes, they are turkey rashers, I can’t eat bacon.

Mrs L: He doesn’t eat anything with four legs.

(A simple and slightly amusing way of explaining the problem that has become something of a default position in recent years)

At this point the cashier looks puzzled, contemplates the item and then says…

…this was the one that got me…

Cashier: but…turkeys have four legs

…

a short silence ensued, I must have looked a little dumbstruck, she proceeded to make little flappy motions with her arms as if to suggest she was including wings in the equation, but this was never going to wash.

In a bizarre kind of way, this little gem has really made my day worthwhile, so thanks Tesco, you’ve made an old man very happy today.